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Reimagining Health Data Exchange: an Application Programming Interface–Enabled Roadmap for India Reimagining Health Data Exchange: An Application Programming Interface–Enabled Roadmap for India The Harvard community has made this article openly available. Please share how this access benefits you. Your story matters Citation Balsari, Satchit, Alexander Fortenko, Joaquín A Blaya, Adrian Gropper, Malavika Jayaram, Rahul Matthan, Ram Sahasranam, et al. 2018. “Reimagining Health Data Exchange: An Application Programming Interface–Enabled Roadmap for India.” Journal of Medical Internet Research 20 (7) (July 13): e10725. doi:10.2196/10725. Published Version 10.2196/10725 Citable link http://nrs.harvard.edu/urn-3:HUL.InstRepos:37308238 Terms of Use This article was downloaded from Harvard University’s DASH repository, and is made available under the terms and conditions applicable to Other Posted Material, as set forth at http:// nrs.harvard.edu/urn-3:HUL.InstRepos:dash.current.terms-of- use#LAA JOURNAL OF MEDICAL INTERNET RESEARCH Balsari et al Policy Proposal Reimagining Health Data Exchange: An Application Programming Interface±Enabled Roadmap for India Satchit Balsari1,2, MD, MPH; Alexander Fortenko3, MD, MPH; Joaquín A Blaya4, PhD; Adrian Gropper5, MD; Malavika Jayaram6, LLM; Rahul Matthan7, LLM; Ram Sahasranam8; Mark Shankar9, MD; Suptendra N Sarbadhikari10, PhD; Barbara E Bierer11, MD; Kenneth D Mandl12,13, MD; Sanjay Mehendale14, MD, MPH; Tarun Khanna9, PhD 1Beth Israel Deaconess Medical Center, Harvard Medical School, Department of Emergency Medicine, Boston, MA, United States 2Harvard FXB Center for Health and Human Rights, Boston, MA, United States 3NewYork-Presyterian Hospital, Emergency Medicine, New York, NY, United States 4The Human Diagnosis Project, Washington DC, DC, United States 5Patient Privacy Rights, Boston, MA, United States 6Digital Asia Hub, Hong Kong, China 7TriLegal, Bangalore, India 8Athenahealth, San Francisco, CA, United States 9Harvard Business School, Boston, MA, United States 10International Institute of Health Management Research, New Delhi, India 11Brigham and Women's Hospital, Harvard Medical School, Boston, MA, United States 12Boston Children's Hospital, Computational Health Informatics Program, Boston, MA, United States 13Harvard Medical School, Department of Pediatrics and Department of Biomedical Informatics, Boston, MA, United States 14Indian Council of Medical Research, New Delhi, India Corresponding Author: Satchit Balsari, MD, MPH Harvard FXB Center for Health and Human Rights 651 Huntington Avenue, 703C Boston, MA, United States Phone: 1 6174320011 Email: [email protected] Abstract In February 2018, the Government of India announced a massive public health insurance scheme extending coverage to 500 million citizens, in effect making it the world’s largest insurance program. To meet this target, the government will rely on technology to effectively scale services, monitor quality, and ensure accountability. While India has seen great strides in informational technology development and outsourcing, cellular phone penetration, cloud computing, and financial technology, the digital health ecosystem is in its nascent stages and has been waiting for a catalyst to seed the system. This National Health Protection Scheme is expected to provide just this impetus for widespread adoption. However, health data in India are mostly not digitized. In the few instances that they are, the data are not standardized, not interoperable, and not readily accessible to clinicians, researchers, or policymakers. While such barriers to easy health information exchange are hardly unique to India, the greenfield nature of India’s digital health infrastructure presents an excellent opportunity to avoid the pitfalls of complex, restrictive, digital health systems that have evolved elsewhere. We propose here a federated, patient-centric, application programming interface (API)–enabled health information ecosystem that leverages India’s near-universal mobile phone penetration, universal availability of unique ID systems, and evolving privacy and data protection laws. It builds on global best practices and promotes the adoption of human-centered design principles, data minimization, and open standard APIs. The recommendations are the result of 18 months of deliberations with multiple stakeholders in India and the United States, including from academia, industry, and government. (J Med Internet Res 2018;20(7):e10725) doi:10.2196/10725 http://www.jmir.org/2018/7/e10725/ J Med Internet Res 2018 | vol. 20 | iss. 7 | e10725 | p.1 (page number not for citation purposes) XSL·FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Balsari et al KEYWORDS health information exchange; India; health APIs wrist [4]. However, the lack of standardization among data Introduction storage systems makes it virtually impossible to combine and Background collate data from multiple sources, resulting in duplication, redundancy, wastage, and delays [5]. India’s population of over 1.3 billion is served by over 2.5 million health care workers of varying qualifications. The vast The concept of a personal health record (PHR) has long been majority of clinical interactions are not digitized. In the few floated as one potential solution to disjointed health care data instances that they are, the data are not standardized, not [4,6,7]. A PHR relies on a patient-controlled repository where interoperable, and not readily accessible to clinicians, data may be accessed from multiple nodes within the system. researchers, or policy makers [1]. While barriers to easy health Standalone PHRs mostly rely on the patient’s drive and ability information exchange (HIE) are hardly unique to India, the to input data [8,9]. Tethered (ie, connected) PHRs are greenfield nature of India’s digital health infrastructure presents patient-accessible components of electronic medical records an excellent opportunity to avoid the pitfalls of complex, linked to an institution or health system [8,9]. Still, there are restrictive, digital health systems that have evolved elsewhere. drawbacks. PHRs seldom allow direct input from or access to entities outside the network. Neither PHR model allows for the In February 2018, the Government of India announced a massive development of third-party applications (app) on the patient’s public health insurance program under the National Health health data repository. Although there is interest from the Protection Scheme (NHPS), offering Indian Rs 500,000 consumer, widespread adoption of both has been hindered by (approximately US $ 7,600) in annual coverage to 100 million concerns about data ownership, interoperability, security, and households, or nearly 500 million citizens [2]. To meet this bold scalability [10-12]. The Ministry of Health and Family Welfare target, the government will rely on technology to effectively (MoHFW) in India has demonstrated an interest in developing scale services, monitor quality, and ensure accountability. While a PHR-based system [13]. India has seen great strides in informational technology development and outsourcing, mobile phone penetration, cloud In recent years, additional individual and population health data computing, and financial technology, the digital health have been generated by wellness gadgets (eg, Fitbit), Web-based ecosystem is in its nascent stages and has been waiting for a diagnostic devices (eg, AliveCor), patient-facing apps (eg, catalyst to seed the system. The NHPS is expected to provide Stanford Healthcare), provider-facing apps (eg, Practo), or just this impetus for widespread adoption. researcher-facing apps (like Apple’s Research Kit). These new apps and gadgets create additional silos of health data. In fact, We propose here a federated, patient-centric, application of the 260,000 mHealth apps that existed on the last count, 90% programming interface (API)–enabled health information were free—their financial viability predicated on their ability ecosystem that leverages India’s near-universal mobile phone to monetize the data they collect [14]. In the United States (US), penetration, universal availability of unique identification (ID) the 21st Century Cures Act (2016), mandated that “certified” systems, and evolving privacy and data protection laws. The health information technology (IT) products have APIs that arguments laid out here are the result of an extended set of allow health information to be accessed, exchanged, and used deliberations that began at an interdisciplinary seminar held at “without special effort.” Standardization was not mandated, Harvard in September 2016 and have since resulted in potential making interoperability difficult to implement [15]. In India, pathways for prototype development in India. while the mHealth industry is booming and expected to grow The State of Health Data Exchange exponentially, there are no legal provisions to regulate access Electronic Health Records (EHRs) have traditionally been closed to personal health data that flow in and out of these devices and systems, sometimes incapable of sharing access across platforms apps, and sometimes across international borders [16]. within the same institution, and almost never across vendors at The call for data integration, universal compatibility, and independent institutions. While more systems now allow patients portability has come from many quarters. There is no shortage access to their health-related data, few EHRs give patients of standards, but few are universally applied. There are standards control over how their data will move across institutions or be for nomenclature
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